Patient, Caregiver, and Physician Perspectives on the Burden of Disease Chronic Refractory Gout and Its Treatment: Concept Elicitation
Author(s)
Angelo Gaffo, MD1, Bhavisha Desai, Pharm D2, ABIOLA OLADAPO, PhD2, Nana Kragh, MSc3, Rebekah Zincavage, PhD4, Brad Padilla, MPH4, Naomi Schlesinger, MD5;
1University of Alabama, Division of Rheumatology and Clinical Immunology, Birmingham, AL, USA, 2Sobi Inc, Waltham, MA, USA, 3Sobi, Stockholm, Sweden, 4Stratevi, Boston, MA, USA, 5University of Utah, Salt Lake, UT, USA
1University of Alabama, Division of Rheumatology and Clinical Immunology, Birmingham, AL, USA, 2Sobi Inc, Waltham, MA, USA, 3Sobi, Stockholm, Sweden, 4Stratevi, Boston, MA, USA, 5University of Utah, Salt Lake, UT, USA
Presentation Documents
OBJECTIVES: Treatment options are limited for chronic refractory gout (CRG), highlighting significant unmet needs. Studies on treatment experiences, decision-making, barriers, and the impact of CRG on patient (PT) lives from the perspectives of PTs, caregivers (CGs), and physicians (PHYs) are limited. This research explored CRG treatment experiences and impacts on health-related quality of life (HRQoL) with these participants.
METHODS: Qualitative 60-minute interviews were conducted anonymously from April -May 2024 with adult PTs, informal CGs, and PHYs who treat CRG PTs. PT and CG interviews examined CRG’s impact on HRQoL, adherence, factors driving treatment choices, treatment experiences, PHY interactions, and CG burden. PHY interviews assessed views on PT experiences, interactions, and treatment barriers/burdens. All interviews were coded in ATLAS.ti and thematically analyzed within and across the three groups.
RESULTS: 6 adult PTs, 4 CGs, and 8 PHYs (nephrologists,n=5; rheumatologists,n=3) completed interviews. PTs, CGs, and PHYs emphasized the wide-ranging impacts of CRG on PTs’ lives due to severe pain and limited functionality associated with gout flares, including restricted mobility, inability to complete daily activities, and financial/employment impacts. Each participant highlighted PTs’ emotional impacts, mainly frustration. CGs experience absenteeism, stress, physical impacts, disrupted routines, and time lost due to appointments/treatment sessions. PHYs consider multiple factors beyond efficacy and side effects in treatment decisions including, PT circumstances, disease severity, PT receptivity, medical history, side effects, and adherence. When considering treatment options, 50% of PTs prioritized side effects above other factors. PTs reported lack of efficacy, side effects, contraindications, travel burden, and access/insurance issues as additional barriers/burdens. PHYs and CGs cited inefficacy, side effects, access/insurance issues, comorbidities, costs, travel burden, and polypharmacy complexities as key barriers/burdens.
CONCLUSIONS: PTs, CGs, and PHYs reported substantial burden and impact associated with CRG and its treatment, suggesting the need for efficacious, safe, and less burdensome new treatment options, improving PTs’ quality of life.
METHODS: Qualitative 60-minute interviews were conducted anonymously from April -May 2024 with adult PTs, informal CGs, and PHYs who treat CRG PTs. PT and CG interviews examined CRG’s impact on HRQoL, adherence, factors driving treatment choices, treatment experiences, PHY interactions, and CG burden. PHY interviews assessed views on PT experiences, interactions, and treatment barriers/burdens. All interviews were coded in ATLAS.ti and thematically analyzed within and across the three groups.
RESULTS: 6 adult PTs, 4 CGs, and 8 PHYs (nephrologists,n=5; rheumatologists,n=3) completed interviews. PTs, CGs, and PHYs emphasized the wide-ranging impacts of CRG on PTs’ lives due to severe pain and limited functionality associated with gout flares, including restricted mobility, inability to complete daily activities, and financial/employment impacts. Each participant highlighted PTs’ emotional impacts, mainly frustration. CGs experience absenteeism, stress, physical impacts, disrupted routines, and time lost due to appointments/treatment sessions. PHYs consider multiple factors beyond efficacy and side effects in treatment decisions including, PT circumstances, disease severity, PT receptivity, medical history, side effects, and adherence. When considering treatment options, 50% of PTs prioritized side effects above other factors. PTs reported lack of efficacy, side effects, contraindications, travel burden, and access/insurance issues as additional barriers/burdens. PHYs and CGs cited inefficacy, side effects, access/insurance issues, comorbidities, costs, travel burden, and polypharmacy complexities as key barriers/burdens.
CONCLUSIONS: PTs, CGs, and PHYs reported substantial burden and impact associated with CRG and its treatment, suggesting the need for efficacious, safe, and less burdensome new treatment options, improving PTs’ quality of life.
Conference/Value in Health Info
2025-05, ISPOR 2025, Montréal, Quebec, CA
Value in Health, Volume 28, Issue S1
Code
PCR211
Topic
Patient-Centered Research
Topic Subcategory
Patient Engagement, Patient-reported Outcomes & Quality of Life Outcomes
Disease
No Additional Disease & Conditions/Specialized Treatment Areas, SDC: Musculoskeletal Disorders (Arthritis, Bone Disorders, Osteoporosis, Other Musculoskeletal)